e-Petition debate on child cancer

An e-petition on the Parliament and Government petitions website calling for child cancer to be forced to the forefront of the NHS and Government funding schemes has received over 115,000 signatures. It will now be the subject of a Westminster Hall on 28 November 2016, Ben Howlett will lead the debate.

Children’s cancers

Cancer in children is rare, accounting for 0.5% of all cancers in the UK, but it is the most common cause of death from illness in those aged 1-15 years.[1] The most common types of cancers to affect children are leukaemias and cancers of the brain and spinal cord. Cancer in children tends to affect different parts of the body to adult cancers, and responds differently to treatment.[2]

The success rates for treatment of children’s cancers have improved significantly in last few decades. Cancer Research UK (CRUK) have recently announced that figures show that the rate of children dying from cancer has fallen by over 30% in the last 20 years. They report that much of this success is due to new chemotherapy regimens, and improved imaging and radiotherapy techniques.[3]

However, CRUK caution that despite this improvement, around five children still die of cancer in Great Britain each week, and those who do survive may live with long term side effects of treatment that can affect them in adult life. They report that more research is needed to look at new ways to treat children’s cancers with fewer side effects.

Beyond the impact of the disease itself, the often long term treatment can also have significant effects on the child and the wider family. CRUK highlight evidence of increased withdrawal, anxiety and depression in childhood cancer survivors. They also outline the support available to the child and their family:

• How cancer affects the child and their family

Although about 8 out of 10 children are now successfully treated, childhood cancer is still devastating for everyone concerned. Treatment can last for months, or even years, which means long stays in hospital and being away from the home, school, friends and siblings. School age children may fall behind. Even though children’s wards have teachers to keep the children's school work up to date, side effects from the cancer and its treatment often make children very tired. They may feel like not doing anything at times, except having a cuddle with mum or dad.

Cancer Research UK scientists have found evidence of increased withdrawal, anxiety and depression in childhood cancer survivors 9 months after diagnosis. They have been looking at how families cope when a child has cancer and what factors are important in making the child (and family) either more vulnerable or better able to cope with the cancer and its consequences.

As well as the doctors and nurses on the ward, you and your child will be supported by a number of professionals during and after treatment, including your GP, cancer nurse specialists, social workers, play specialists and a psychologist or psychotherapist.[4]

Cancer services for children

The National Institute for Health and Care Excellence (NICE) guidance on Improving Outcomes in Children and Young People with Cancer (CSG7, 2005) recognises cancer in childhood is rare and includes a wide range of cancers with small numbers of patients with each type of cancer. Hence, in order to improve treatment and survival of cancers, the national approach has been to commission these services for large populations of at least 2 million to maximise the opportunities for standardising care and evaluating outcomes. NHS England’s service specification for paediatric oncology is sets out that care is centralised in Principal Treatment Centres (PTCs) for Children’s Cancer to ensure depth and breadth of cancer coverage.[5] The PTC retains overall responsibility for the cancer treatment plan but defined aspects of care are delivered in a Paediatric Oncology Shared Care model provided through designated Units in a number of District General Hospitals (DGHs) outside these specialist centres. In most cases the PTC for children and teenagers & young adults is within the same trust and in all cases they should work closely together.[6]

NHS England’s service model recognises that children with cancer are different to adults because they are children, and because the cancers common in childhood differ from those common in adults. Children’s needs differ according to their developmental stage (emotional, social, psychological and physical) and the need to consider the impact on the wider family of a cancer diagnosis. NHS England’s service specification notes that across the age spectrum, children are as different from each other as they are from adults. Therefore a holistic approach to needs assessment is an essential part of service design.[7]

NHS England, Teenage Cancer Trust and CLIC Sargent have developed a helpful introduction to services for teenagers and young adults with cancer. It explains the general standards of care to expect from the NHS:

• NHS Cancer Services for Teenager and Young Adults (November 2015)

Following on from the Coalition Government cancer strategy, Improving Outcomes: A Strategy for Cancer, published in 2011, in January 2015 NHS England announced a new independent cancer taskforce to develop a five-year action plan for cancer services to improve survival rates and save thousands of lives.[8] The taskforce developed a new cross-system national cancer strategy to 2020, building on NHS England’s vision for improving cancer outcomes as set out in the NHS Five Year Forward View.[9]

A 2014 NICE Quality Standard on Cancer Services for children and young people provides a set of statements to drive improvement in care in this area. [10] This includes that children and young people with cancer should be offered the opportunity to take part in clinical trials, that chemotherapy should be prescribed using an electronic prescribing system, and that children and young people with cancer, and their families should have a psychological and social needs assessment during their care.[11]

The Cancer Strategy

The independent Cancer Taskforce’s five-year strategy for cancer, Achieving World-Class Cancer Outcomes: A Strategy for England 2015-2020 was published in July 2015.[12] It included 93 recommendations for improvements across cancer treatment, support and research, with the aim of improving survival rates, awareness and the quality of care people receive. It included three recommendations specifically related to children and young adults with cancer, as well as a number of others with implications for children. The strategy set out the following headline ambitions:

• A decrease in the age standardised incidence of cancer and a reduction in the number of cases linked to deprivation.
• Reduction in the adult smoking rate from 18 per cent currently to 13 per cent by 2020.
• By 2020, 57 per cent of cancer patients should be surviving for 10 years or more.
• A reduction in variability by Clinical Commissioning group on one-year survival and a target of increasing one year survival to 75 per cent by 2020 (currently, 69 per cent).
• A move toward a more patient-centred service and continuing improvement in patient satisfaction data.
• The introduction of ‘cancer dashboards’ presenting headline data at CCG and provider level. This would include information on things such as: proportion of people receiving a firm diagnosis or cancer being excluded by certain time points; cancer diagnosed via emergency presentations; proportion of cancers diagnosed at an early stage.

The strategy then goes on to set out the actions and funding needed to meet these goals; it has a particular focus on prevention and early detection. It estimate that if the NHS fully implements the measures recommended, an additional 30,000 patients per year may survive cancer for ten years or more by 2020 of which almost 11,000 will be through earlier diagnosis.

The strategy included the following section on children, teenagers and young adults (CTYA), noting improvements in services:

Cancer services for children, teenagers and young adults (CTYA) have improved significantly and deliver better outcomes for patients. In children (aged 0 – 14) in particular, five-year survival has increased from 40% in the early 1970s to 82% today103. However, some types of children’s cancer remain very hard to treat. Furthermore, many patients suffer long-term physical and psychological consequences of their treatment in to adulthood. Over the last few decades, the impact of some of these longer-term consequences has reduced, as we have better understood them and reduced the intensity of treatments given.

The NHS needs to consider the best structure for CTYA cancer services to ensure we continue to improve on the care and experience that patients receive. Outside London, only four centres treat more than 100 children with cancer per year, across all types of cancer. There is an opportunity to consider whether outcomes could be improved through further reconfiguration of services. Any review should be based on patient outcomes, including patient experience, as few centres offer comprehensive specialist services for children. Transitions continue to pose a problem in some areas, with paediatric services stopping at 16 in some hospitals but adult services not starting until 18. In addition, pathways between specialist centres and shared care units currently cause a great deal of difficulty for patients. This needs to be addressed. • 43: looks at a possible review of CTYA services to provide improved integrated care • 44: consent from children and young people for their data and tissue collection for use in future research studies and development of services, and • 45: that NHS England, National Institute for Health Research (NIHR) and cancer research charities to consider ways in which access to clinical trials for teenagers and young adults with cancer could be significantly increased.[13]

A Department of Health news story published on 13 September 2015 gave details on how some of the measures in the strategy would be taken forward. This includes a pledge that by 2020, people with suspected cancer will be diagnosed within 28 days of being referred by a GP.

The strategy made three specific recommendations relating to CTYA services:

• 43: looks at a possible review of CTYA services to provide improved integrated care
• 44: consent from children and young people for their data and tissue collection for use in future research studies and development of services, and
• 45: that NHS England, National Institute for Health Research (NIHR) and cancer research charities to consider ways in which access to clinical trials for teenagers and young adults with cancer could be significantly increased.[1]

A Department of Health news story published on 13 September 2015 gave details on how some of the measures in the strategy would be taken forward. This includes a pledge that by 2020, people with suspected cancer will be diagnosed within 28 days of being referred by a GP.

[1] Independent Cancer Taskforce, Achieving world-class cancer outcomes. A strategy for England 2015-2020, July 2015

[2] CRUK, Children's cancers, 2014

[3] CRUK, Children’s cancer death rates drop over 20 years, 17 November 2016

[4] CRUK, Children's cancers, 2014

[5] From 2013 the children’s cancer pathway has been commissioned through NHS England as a prescribed service. Clinical Commissioning Groups (CCGs) and Local Authorities may directly, or through other collaborative arrangements, commission other elements of the pathway.

[6] NHS England Service Specification, Paediatric Oncology (2013)

[7] Ibid.

[8] NHS press release, ‘NHS launches new bid to beat cancer and save thousands of lives’, 11 January 2015

[9] PQ HL4935 [on Cancer], 25 February 2015

[10] NICE, Quality Standard, Cancer services for children and young people, February 2014

[11] NICE, Quality Standard, Cancer services for children and young people, February 2014

[12] Independent Cancer Taskforce, Achieving world-class cancer outcomes. A strategy for England 2015-2020, July 2015.

[13] Independent Cancer Taskforce, Achieving world-class cancer outcomes. A strategy for England 2015-2020, July 2015